Need advice and what to expect

[Barnsey85]

Hi All Lupus Warriors

I need some advice what to expect when I go for my treatment next month rituximab treatment it’s my first dose please.

What to take with me to hospital when I’m sat there for 6 hours.

Any advice would be grateful

Thank you

Carmen x

[weathervane]

I had last rituximab in February, the regime might have changed because of covid .

Normal i go in to unit , staff get you settled in reclining chair . You get antihistamine , paracetamol and steroid along with rituximab, when you get antihistamines it can make you quite sleepy. It is usually an all day affair, i get it at slow rate as first time i had bad gastritis, slow rate has helped. The staff check your temperature and bp at regular intervals incase of a possible reaction. We get cups of tea , and lunch of soup and sandwiches .

Bring a good book , something not to hard to concentrate on as alot of distractions , some people download a movie ( bring headphones) . Take a cardigan in case you get chilly, and maybe some sweets to suck or some snacks .

There have been some posts saying that some units are giving a single stronger dose so don’t have to go back in two weeks . Afterwards I usually feel drained and very tired for a couple of days so i get a lift home and go to bed for a while , usually dont have much of an appetite .

I hope all goes well for you as rituximab has really helped me , though can take 12 weeks and maybe a second round to kick in . Best wishes and stay safe xx

[Barnsey85 in reply to weathervane]

Thank you weathervane for your reply I’m going into the unit for the treatment and once that is done I go back again in 2 weeks time for my second dose. I can’t believe i have to be there at 8am I haven’t seen that time in ages since I’ve been poorly 😂😂

[weathervane in reply to Barnsey85]

Good luck carmen , you will hopefully be able to recline your chair and snooze 😴 . Hopefully you won’t have to wear a face mask all the time , let us know how you get on xx

[Barnsey85 in reply to weathervane]

Thank you I will do weathervane stick some headphones in and hopefully fall asleep xx

[HelenL75]

Weathervane’s experience sounds same as mine - I have had three lots of rituximab two lots each time, two weeks apart last time just before lockdown, I usually take a magazine or book and listen to music or podcasts but inevitably fall asleep

Definitely take sweets, a drink and a cardie or wrap in case it’s cold although usually warm in hospitals

Staff are always lovely and you get fed and watered usually

I usually drive myself but the first time I got a lift as you do feel tired afterwards and for me next day as well and does take a few weeks to kick in especially first time I found

I usually enjoy the day or no calls and emails the most 😉

[Barnsey85 in reply to HelenL75]

Thank you HelenL75 I’m going load up on magazines and listen to music hopefully fall asleep whilst I’m there.

[Jaylowdancer]

My last infusion was last year. I looked forward to those days cause it was my sleep all day and noone bothers me from work or school day.

Same experience as everyone else I guess. Since they gave me antihistamines before the infusions it made me super sleepy. So i chose the arm that would stick out so the can always take my temperature and blood pressure while I was napping. Dont know how they do it now. But i heard they try to cut down the time by directly injecting a few mg of the rituxuamb in the IV.

They gave me sandwiches, tea, water and some snacks. We had tv to watch if we wanted. The infusion center i went to were separate cubbies. So no-one was bothering on another. I always brought my fleece with me. I was always cold.

I toke the train one time after my infusion but i always felt a little laggy after, so after that one time i toke a cab home or someone toke me home.

Don’t have anyone go with you, unless they dont mind sitting there with you for 6 hours. They dont get great seats.

[Barnsey85 in reply to Jaylowdancer]

Thank you for your advice Jaylowdancer I asked if my hubby can stay with me but they said no one was allowed to be in just the patient but that’s in Sheffield royal Hallamshire but I don’t mind sitting there for 6 hours or get some decent sleep.